A.S. Face 0046 : Deana DeVries
My name is Deana DeVries and I am a face of Ankylosing Spondylitis.
I had symptoms for years starting around the age of 25. I was told my pain was caused by stress and there was nothing wrong with me. I had many sleepless nights due to the pain in my lower back and surrounding my ribcage. I went to the Orthopedics and Physical Therapy for years and years and no one could tell me what was wrong with my body.
One day I woke up with a terrible eye infection. The pain was horrible and I could not see out of my right eye. I went to the eye doctor and he said it looks like iritis he immediately referred me to the Opthalmologist. He was right I have a very severe bout of iritis. The Opthalmologist knew right away what it was caused by due to my symptoms and pain I described.
My Opthalmologist sent me to a Rhuematologist and I was then sent for x-rays and that is when they found out I was HLA-B27 positive. After proper diagnoses at the age of 31 I was on a mission to get the right meds to treat this agony that I have been suffering so long. I did tons of research on the internet and found out the best thing for me would be to be on Humira. Well it was not that easy. I had to try several meds before my insurance would “approve” Humira. It was hell I got so sick from Methotrexate and Prednisone. I lost a ton of weight and through all this I could still not see out of my right eye. I had to put steroid drops in my eyes for months and months until it healed. I have lost partial sight in that eye permanently.
After trying many meds I got approved for Humira. Humira changed my life. While I still have flares it is nothing like before. I have been on it about 5 years and I have had some moments where I feel like it isn’t working anymore, but all in all it has really been like a miracle drug. I am very weary about side effects but the benefits are so amazing.
As I was very relieved to be properly diagnosed sometimes I get very depressed. Why me? I am too young to be in all this pain. It is not fair! I am trying to be more positive every day. I try to exercise as much as possible because if I don’t I get so stiff. It is hard sometimes but you just got to push through it. I constantly struggle with how much to tell my friends and family about my pain or problems with drug side effects. While I want them to understand and have sympathy for me at the same time I do not want them to feel sorry for me or treat me different. I struggle with making plans too far ahead because I have no idea how I will feel. I don’t want to seem flakey when I have to cancel last moment. I do as much as I can when I can and when I can’t I rest. This is the best I can do and it is going to be a lifelong learning experience for myself, family and friends. I am lucky to have an amazing supportive family and I am also very grateful for groups like this that really understand what I am going through. I am not alone and it will be ok.
Thank you for allowing me to share my story.
Los Angeles, California United States of America